Death and the Elephant

There are some days not quite as bright as others, even when the sun is shining. The dark clouds of grief, or fear, or anger, or helplessness just roll on in like an impending storm to obliterate any rays of hope and possibility.

The elephant in the room looms impossibly loud and large, knocking the china flying like a bull in a china shop. The world stands still but you can’t find the exit. And the roller coaster lurches on, up and down, your face a rictus of terror, a silent scream, on this white-knuckle ride.

Oh for a spoonful of normality. When problems were just problems, and not everything was reflected in the mirror of mortality; not everything had a full stop.

Days when it is too painful to look back and too painful to look forward, that find you adrift and isolated from the everything you treasure. No analgesic to numb this wound. This is the deepest cut.

On days like this, collar turned up, back to the wind, your coat of self-pity a defense and a refuge, beneath which lies your nakedness and vulnerability and the scars of your human frailty.

And as I lie with this unwelcome bedfellow, who whispers unsweet nothings of nothing into my ear, fuelling the terrors and painting the world black, willing me to break, seducing me down the path of hopelessness and despair, I chose surrender. To surrender to the uncomfortable emotions, to honour my vulnerability, to let the cracks show and the tears flow. There is no shame in admitting that sometimes you hit a brick wall, that putting on a brave face just doesn’t cut it, that you want (and do!) to throw all your toys out of the pram.

Because it’s hard, isn’t it? It’s hard to keep on keepin’ on, it’s hard to GLIDE, it’s hard not to see the glass half empty, when you have been issued a sell-by date, and options – a word that can both give and eradicate hope – are running out. It’s hard not to be blinded by the PR, that cancer is a one-way ticket to you-know-where, that life with cancer is akin to going to war, combat unarmed, a battle, a fight against a hostile and deadly assassin. The unexpected visitor, who creeps in unannounced and univited to hijack your health, steal your future and evict you from your life. Who tries to recast us as victim, as tragic, as less than we were, not merely in our eyes but in the eyes of others, whose gaze as it falls upon you turns to one of pity, and fear. For the contagion of cancer is epidemic – it spreads from the unwitting host to friends and family, as if cancer contaminates and infection were a natural consequence, and suddenly one finds oneself in isolation when people can’t see beyond their own relationship with mortality which arises from a cultural fear of death.

Yet, is it death itself we fear? Death has become a taboo – a dirty word, something to be hidden away, expunged, talked about in hushed tones. Much like cancer, have you noticed that? How people change their tone of voice into a “cancer voice” How people brace themselves to see you, because they are never quite sure what to expect? The extra vigorous hug that lasts just a little longer than before. The surprised/relieved “don’t you look wells” The long goodbye – in case it’s the last time? Treating you like a china ornament as if having cancer might cause you to shatter into a thousand fragments right before their eyes.

A person can become concealed beneath the shroud of cancer: the myths, metaphors and cultural expectation of cancer and its association with death play to our deepest most primal fears. This, I believe is also an epidemic dis-ease: the “elephant in the room” which goes by the name of death. But rather than ignore it, which is futile thanks to its unswerving inevitability, let’s dare to look it in the eye. Ignoring the prospect of death cultivates a terrain of fear watered by our anxiety and ignorance, is it not better to explore what death means to us in order to navigate our way through to calmer waters?

My first experience of death came from the east. My maternal grandfather who was from China passed when I was very young. But I remember aspects of the ceremony which would be alien here in this country, but engage us with the passage and process of life and death. Offerings are made to ensure the deceased is well cared for in the afterlife, houses, money, cars, even mobile phones cut from paper are burned to symbolise the things they may enjoy or require. Families regularly tend their graves with offerings of food and incense to ensure they are well fed, and so that they know they are loved and missed. There is nothing a spirit loves more than to know they are still remembered and cared for. On some level it demystifies the whole process, and gives those left behind a means of continuing a relationship, not merely of grief, but of love and care and remembrance.

The way I see it, is that death itself is not what I fear, death is a bridge between worlds: this life and whatever lies beyond. It is a gateway, a portal through which our soul, our spirit, will pass, in the same way we passed from some other time and space in order to be born into this life. I have smelled death close. Almost 18 months ago now, when it tapped on my shoulder and called my name, enticing me Pied Piper-like to cross over; but thankfully my saviour appeared in the form of Dr B who performed a life-saving procedure, and aided by my allies from the invisible realms, ensured that I hang out in this life for a while yet.

So, moving on does not scare me. I have glimpsed enough of the world of spirit, through working as a shamanic practitioner and healer for several years before I was diagnosed, not to be afraid. To understand that we have willing and able allies and ancestors in the invisible realms beyond the veil who want and yearn to assist us. And that, we too, when we pass on, may be able to assist those that remain and our ancestors yet to come.

In order to corral the landslide of invading emotions, let’s separate them out, and look at what’s really going on. When emotional response such as fear, anger, grief, bitterness and so on lock horns it is easy to become overwhelmed and enmired in confusion; one can become entrenched beneath the weight of despair which results in an inability to know what to do and may culminate in the futile resignation to give in. It’s unsurprising, there are only so many times you feel you have the energy and will to deal with it.

Let’s look at two of the most common sources of anxiety for someone with cancer, especially if, like myself, your diagnosis is staged 4:

Leaving loved ones. And leaving full stop.

No one wants to leave the people they love. The imagined pain of that final separation is intolerable. BUT, what is the emotion? If we can pinpoint what it is we are experiencing, perhaps, we can find a means to make peace or honour that truthfully, rather than remain stuck in the overwhelming storm inside heads, the resultant stress of which can be as destructive and as debilitating as the cancer itself. So ask yourself, how does it make me feel to leave my loved ones? Afraid, angry, sad . . . etc? Using myself as an example, I can see that it is not fear, nor anger right now, but sadness. It makes me sad to think I may have to travel on alone, without the companions from this life that I cherish so dearly. Deeply sad. But, this is so for everyone, cancer or no cancer, one day, we all have to part and move onwards on the next stage of our soul’s journey. And who is to say that one hell of an extraordinary adventure doesn’t await us? Unlike me, you may not believe in a spiritual journey, an afterlife, but what I do know is that we leave a little part of ourselves buried in the hearts of those we love, that we live on in their memories, and that while we can, all of us, invest in their futures by expressing our love and gratitude for them. It strikes me how afraid we are of expressing what we truly feel to others, of showing or talking of love. Of all the fears we cling onto, don’t allow this to be one of yours. It is the greatest gift to be able to freely express your love, and an even greater gift to receive.

As a parent, one’s fear of dying multiplies. Actually, I don’t know if that really is the case, but it’s the only perspective I have. In order to put a positive spin on a devastating situation, I am only grateful that my children are adults, they are on their way, they have weathered the storms of childhood and adolescence and beginning to carve out lives independent from parental influence. That I may not be around to witness milestones, or be a shoulder and support for whatever challenges life brings motivates me and inspires me to live by example, to pay it forward. If I can have courage in the darkness, if I can face the challenges that I will meet, if I can enjoy my life, have adventures, turn tragedy into opportunity, show them that no matter what, it is possible to rise, be empowered even when the winds are against you, be creative, be of service, contribute to the community, to pick yourself up and dust yourself off time after time, to acknowledge truthfully when it hurts, to ask for help, to be resilient, to laugh, to cry, to dare to love, then, then I am still doing my job, from that little place in their hearts where time and space are eternal.

And as for leaving. Well, I won Best Exit once, back in the day at the Soap awards, for leaving Emmerdale so dramatically and efficiently. I joked at the time it was a “glad to see the back of me” award. This time I am blowing up nothing except expectation – the expectation that cancer is a thief on a mission to steal my life. The expectation that one must follow the rules both of the disease and how one is required to behave when one has the disease. The expectation to go off and quietly die, without challenging the system to be a good patient, to follow the rules and embrace the noble victim personality.

Am I afraid to die? Of death itself – see above, of dying? Yes, of course, the uncertainty of the “how” is a rational fear. The universal hope for us all is that it is quick, painless and preferably in our sleep, but I suspect that the road will be a little less predictable. And a little less cinematically poetic than prosaic. What I would hope for is a “conscious” death. In which acceptance replaces anxiety, and love and grace are my companions.

Another word for human beings is mortals, a word that contains the word death, a reminder that we are all on this cycle of birth, life and death. It’s how we fit into the rhythms of the universe, ever replenishing and renewing, all of nature, and indeed the cosmos is subject to this law of birth life and death. I look to Shiva for inspiration, the Hindu God who represents creation and destruction and everything in between, and who in his incarnation as Nataraja, Lord of the Dance is believed to release mortals from the snare of illusion: thus instilling an understanding of our place in the cosmos.

That cancer has severely compromised my health cannot be denied, but my spirit is intact. Bruised, battered and in need of some TLC from time to time. But please, please cancer is a physical malady, do not give it permission to infect the beauty of your spirit. Let cancer become your reason to be everything you hoped you might be, why not? There is nothing to lose and everything to gain from discovering just who you are and what you are made of and celebrating life with every fibre of your being.

What futility to fear the inevitable and unavoidable. It is energy wasted and time lost. However, don’t reprimand or blame yourself when you become lost in the fog. We all need to surrender to that at times. Remember to be gentle and compassionate with yourself. It’s OK to struggle. It’s really quite OK.

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Leah, I hear you and feel your spirit through your words, I don’t need to physically know you to feel that and yet I wish I could embrace you just to give you the simple yet beautiful act of kindness of an embrace. To just be human alongside you. Not my job, my status, just a human wanting to see and hear you to help make sense of things, as we are all striving to do. My sister passed almost 2 years ago. I want to be real and present with you and share with you that yes her journey was similar to yours. We never treated her as a “sick person” and she too never ever complained. She continued as Kim. Kim the woman with things to do. And she did. Showing immense respect for life and others regardless of no hair, no eyebrows at one point. Yes she had meltdowns at times but she continued to shift her focus when it tried to drown her, she continued to get up and get on. I really hear Kim (my sister) through so much of what you say, although she did not wish to talk about the elephant much. When she did it was a case of “well, I’m getting up, i have things to do”, and would proceed as she wished. Sometimes ignoring advice, but it showed how strong her spirit was. And it took her further than they said if would. Just pure belief, defiance, determination. She didn’t fade, she was impossible at times, choosing to do it her way. And yet without that she would have not had the exceptional last few years she did get. So I say to you, although not knowing you, that I think of you and love you. Illness is like feeling like you are wearing the wrong clothes…I have been ill myself but not to your extent, and yet it felt like what the fuck? I’m in clothes that don’t fit? That’s how it felt. I was like wow this isn’t right? Hang on the fuck a minute here! (Yes I would talk to the air with the whole…Er?? What is this??? This is ridiculous!
So yes you get into places of hope and then find yourself in the complete opposite. The nature of the human struggle. For us all. My advice to my sister was one day at time is all any of us can do and anyone’s life can change in the flick of a switch. I send you abundant light and love….keep rising when it pulls at you!
Love love love…Cher (Liverpool, UK) xxxxoooxxx

Oh my… you certainly got stuck into that one and really did it justice❤
The truth, the untruths, the reality, the pretence, the straight talking and the taking a wide birth around that word Death…
It made me cry and it made me smile… you put me and many others on a rollercoaster ride just by reading it let alone magnifying it a million times and living it… thank you❤
Thank you for your honesty, your bravery in sharing thereby allowing others to discuss it too, mostly for your love and your friendship… my very lovely random friend… I love you 🍃😘❤

You’ve hit the nail on the head again Leah.
However, my experience is that it’s my family that won’t address the elephant in the room. Whilst I think that I’ve (sort of) come to terms with the inevitable, whenever that may be, any mention of it distresses my family. They see any talk of death as me being negative. Whilst, from my point of view, I certainly haven’t given up hope, but have always been a realist. For me, it’s a bit like a jigsaw where I don’t know what the final picture will be, but where I need to explore where the various pieces may fit. Having some idea of what my various options may be, is more reassuring to me than entering the complete unknown – but I’m not allowed to discuss this. It can make dealing with this disease even more difficult.

Such honesty and openness Ali (Leah) you have the courage of a true warrior. Keep fighting and keep writing as your words touch so many lives but more importantly make a difference to so many. Namaste xx

I to have stage 4 lung cancer no symptoms except a backache that only started November then January I am stage 4
I find myself feeling inspired by you I have not asked for prognosis as I to do not intend giving in and I am staying active
The hardest part was telling my children and grandchildren also the rest of. My family
I try to always be strong and through you I know some days it’s okay not to be okay
Thank you